The blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers!
Hopefully you’ll know everything that has been going on from reading the newsletter. If you haven’t already signed up to get it in your inbox, follow this link.
Here’s a brief glimpse – not a complete list – of a few things we have been doing:
- Sara has attended several meetings, mainly on research subjects. Among others, she travelled to Lisbon in March for the PARE congress, Washington for the Lupus think tank in April, and in May, the Lupus Academy, in Lisbon, Portugal and the 8th EULAR Scientifically Endorsed Course on Systemic Lupus Erythematosus, in Pisa, Italy.
- The whole board met in March for multi-stakeholder meetings on research (more information below) and clinical trials – and in June to progress on LUPUS EUROPE’s 2018-2023 Strategic Plan.
- Jeanette, Sara and Anne are attending EULAR this week (meet them at the LUPUS EUROPE / FELUPUS Stand in the EULAR village – V9)
- Anne and Alain are linking with our partners and sponsors to close the current year’s funding. Anne has also been interviewed for press releases and in videos for World Lupus Day.
- Katharine attended EPF’s AGM and continues her work with the EPF Access work group, as well as working on creating closer ties with members (Lupus catch-up chats etc.) and working on various aspects of communication (including the blog).
- In addition to Youth activities with Young PARE and working on preparing the LUPUS EUROPE Youth Patient Panel, Jeanette has also been working on one aspect of the Kick Lupus project – you will hear more during the convention.
- Annemarie Sluijmers, from the Dutch group, NVLE, has also been co-opted to integrate an EPF group, working on Patient Safety.
- Ines from the Portuguese group was instrumental in creating the social media campaign during the month of May. Special thanks must also go to Lupus UK whose material inspired the campaign. In addition to the combined World Lupus Federation campaign, we were all delighted with the social media campaign and the number of people who translated and shared.
- Our friend Nick Hicks, has been helping us to work on the building of a “Voices of lupus” campaign, building on the testimonials collected in Würzburg.
We are also delighted to announce that Jeanette, LUPUS EUROPE’s secretary has been accepted for the EUPATI PATIENT EXPERT COURSE which will begin on the 4th of September 2017 and will run for 15 months.
The EUPATI Training Course – Patient Experts in Medicines Research & Development is an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them.
Upon completion of the course, you should have the knowledge to allow you to make a meaningful contribution to the medicines research and development process, with the aim of providing better medicines to patients. You will also be able to generate a broader dialogue around future patient involvement in the medicines research and development process across Europe.
There is a great need for patient experts in lupus! We need better treatment of our disease and this starts with research. Here patient experts play an important role, because they know how it feels to live with the disease and follow the treatment. Patients and researchers might not always have the same priorities when it comes to developing new treatments for the disease. Often the patient will focus on the side-effects of the treatment and a better Quality of Life, where the researcher is dedicated to minimizing disease activity at (almost) any cost.
World Lupus Day – In addition to the other World Lupus Day activities, you may also have seen the videos, starring Anne, LUPUS EUROPE Vice-Chair, and her wonderful daughter Amélie, speaking up for young people with lupus.
A personal World Lupus Day experience – Hate the disease, love the people!
“This year for World Lupus Day, to continue efforts of awakening public awareness of lupus, Neovacs*, the French Biotech company, decided to create testimonial videos, and publish press releases. They asked me if I would be willing to talk on video about lupus – they would provide the questions and the cameraman. That’s not an offer one refuses!
So, days before May 10th, the journalist and the cameraman came to my apartment and set up. “This will only take 15 mins”… two hours later they left with four videos in their bags. Even if one is used to speaking in public, being filmed is very different and causes more stage fright than I expected.
But they asked the right questions, and let me start and start again, over and over. And while I was filming, my daughter Amélie watched on to make sure that I didn’t say anything too far off topic or too far from the truth. And as she watched, I happened to mention that it was Amélie who was the patient and the reason I was at all involved in Lupus Europe. Their eyes lit up and they turned to her. She smiled timidly, understanding what they were interested in, and said, ok, if they wanted, she would also say something on video.
In my videos, I answered their questions as best I could with a lens pointed straight at me, trying hard to remember all key points that I had prepared in a phone discussion with Bernadette (chair of French speaking Lupus Belgium).
But once I watched the videos, it struck me how, no matter how schooled what I had to say was, it was the honestly and simplicity of that young woman, my daughter, speaking from her heart, that felt true and meaningful, and was the real message. She lives with lupus in her, waiting to pounce when she least expects it, but she lives well, so strong, and that’s what we see on the video.
And in the end, that is the true World Lupus Day message: live your life as best you can, sometimes maybe even forgetting you have lupus, but live like no-one else knows”.
You can access the videos on LUPUS EUROPE’s Youtube channel
LUPUS EUROPE’S NEXT CONVENTION – MILAN, ITALY, NOVEMBER 15 to 19, 2017.
This year´s theme will be pain, fatigue and stress and the programme will combine valuable speakers, interactive workshops and sharing sessions. This will also be the occasion to collect your final input on our 2018-2023 Strategic plan, making sure all our energy is focused on what most matters to achieve our vision of “A fulfilling life for all people living with lupus, until we have reached a world without lupus”.
3 trustee positions are up for election at our Milan 2017 Council meeting. If you, or anyone in your national team, would be interested in joining LUPUS EUROPE’s Board of trustees, don’t hesitate, apply through your national group!
See more about being a LE trustee on our blog: https://lupus-europe-blog.org/2015/05/17/about-being-a-trustee-katharines-story/ or contact one of our current trustees.
LUPUS EUROPE is currently preparing for its next strategic plan from 2018-2023. As a result, we have had extra meetings, including a face-to-face meeting over two days with multiple stake-holders on the subject of research and clinical trials.
WHAT SHOULD LUPUS EUROPE DO ABOUT RESEARCH ?
As part of its work to define its 2018-2023 strategic objectives, LUPUS EUROPE decided to gather input from multiple stakeholders on where it should focus its efforts in the particular area of Research. To achieve this, LUPUS EUROPE held 3 different panel sessions, and gathered input from members through a survey.
The webinar with our medical panel concluded that we should make patients increasingly aware of the valuable and critical role they ALL have to play in Research. LUPUS EUROPE could leverage its European dimensions and use the new ERN to foster collaboration. It could step up Advocacy to make healthcare more accessible. Finally, LUPUS EUROPE could help understand the total burden/cost of the disease, not just medication, but also all direct and indirect impacts.
The industry panel concluded that LUPUS EUROPE could make a meaningful difference by ensuring higher awareness and education on lupus and clinical trials and establishing a panel of “experts” that can connect the patient community to the scientific community and provide advice and support from the very initial stages of research all the way to effective access through treatment plans.
The discussions with other Patient organisations highlighted the critical need to connect with existing structures to avoid non-productive duplication of efforts and amplify our work, and the complexity of setting priorities that will satisfy at the same time the short term aspirations of our members and the investment needed in building capabilities of patients to support research.
Finally, the members survey showed that 87% of them feel engaged in lupus research. 47% promote and encourage participation of their members and 40% raise funds. 47% actively participate and support research by providing expertise, and 20% run some research on their own. With regards to Research, they would set LUPUS EUROPE priorities on (a) Running qualitative research(patients focus groups) and quantitative research to better understand living with lupus; and (b) disseminating results of research in laymen language. Next to Research, they would like LUPUS EUROPE to put more priorities on members (creating synergies, …) and to increase awareness / speaking for patients in general or specific events.
This input will be essential for the board to build its 2018-2023 Strategic plan. For more information, please contact the secretariat (mailto:email@example.com)